There is so much going on this month that my head spins. We kicked off the fundraising for the 2011 Buddy Walk and for Joey's All Stars this week and that has been incredible. Between t-shirt orders (80 so far!!! Multiple orders from Nebraska and from Dayton!) and team sign ups I am trying to stay on top of everything. My efforts to go part-time at work haven't materialized thus far, so that also impedes any free time at night to write, take pictures and get organized. But we try our best and before I could blink, it is almost the end of July. We've got the Buddy Walk on August 20th (click here to donate and or join our team!) and I am also trying to get together Joey's 1st Birthday Party on August 27th and then Thomas Henry turning 3 on September 14th.
In between those big events we have the usual appointments as well as the down time that we try to enjoy and find a moment to just breath and enjoy these beautiful boys. Time must be marching on because Thomas Henry's favorite song has gone from "Colder Weather" to a more summery Zac Brown song called "Knee Deep". For the first few weeks I was not allowed to sing along with it in the car (this is hard to do when you hear it about 50 times a week-- and not to mention it's a pretty catchy tune- well it used to be). He would tell me, "Mom. Don't sing. That man needs to sing." I had flashbacks to my own childhood where my mom would have Linda Ronstadt or The Eagles on the 8 track and I would beg her not to sing in the car. If memory serves me correctly I think she might have wished a child just like me on me. Well, Mom. I think your wish may have come true! After weeks of denying my car singing (the best-- I think better than shower singing because you have the music to help) he started telling me to sing. Hard to sing on cue like that when you are as tone deaf as I am. I literally have to feel the music, but so I sing. Totally off key, but with a lot of gusto. If you see me at a stop light and I look like I'm talking to myself I am actually singing "Knee Deep".
The balancing act (as all mother's know) continues on a daily basis and ultimately I just do my best. I try to balance Joey's appointments and therapy sessions with down time and "neutral" time that really just involves hanging out and being with him as a little one and not as a patient. I continue on the front of also having one on one time with Tommy and giving him attention. The thing is-- they are both such fun kids that if I could, all I would do is spend time with them. Tommy continues to blossom and crack us up with his expanding vocabulary. Apparently if Tommy ever cries or is too wild I say , "Slow down" because that is now his response to everything. Joey crying? Tommy pipes in, "Slow down, slow down, slow down." Tommy in trouble? Getting sent to time out? That also calls for him to tell me to "Slow down, slow down, slow down." It cracks me up. The negotiator in him is coming to light and keeping a straight face gets more and more difficult.
This past week has brought new things to light and I maintain that God shows you what you need to hear/know. It usually just depends on whether or not you are up for listening/accepting it. This past week, I learned of two different people who have Down syndrome who passed away due to heart issues. Their deaths were not recent, but it was the heart connection that got to me. One was an eight month old baby and the other was a twenty-five year old. I learned of these deaths from two different people and they are totally unrelated, but it was a good reminder of the complications that are sometimes a very real reality of also having Down syndrome. Both times I learned of these deaths it hurt my heart in a deep, deep way as I grieved for both the loss of these lives as well as for the parents and families. But, it was a good wake up call. Joey's only 6 weeks post-op. It was a serious operation. He is still healing. I cannot forget what he has been through and how fortunate we are that he is doing well and that he is with us.
I also learned of two new people who I didn't know followed the blog. When someone tells me that they read the blog and enjoy it-- well, I just can't really explain what that means to me. It's incredible. To know that the effort, the time and information is getting out there is just incredible. It reinforces that passion and fuels my inner fire for educating and advocating. Thank you for reading. Thank you for supporting. Thank you for learning.
One last thing that completely floored me and made my week was when a friend told me that this blog has helped take away some of the mystery and some of the fear of having a baby with Down syndrome. I also can't explain what this means to me. It's truly the one major goal of writing this blog. To take away the fear. To shed light on darkness. Again-- I thank you all for the feedback and the support!
Some of Tommy's latest adventures include chasing squirrels in the yard and introducing himself, "Hi Squirrel-- I Tommy." He watches Curious George hang out with squirrels and why shouldn't he? The other morning we heard something in my home office and we went in to witness the following encounter between Tommy and one of two baby hawks that live in the tree outside my office-
While Tommy is busy bird whispering, Joey has been our resident Houdini. I was literally two feet away in our master bathroom. Tommy, Joey and Hershey were all watching Curious George while I got ready. I meant to snap Joey into his little seat, but I didn't think twice about it until I came out of the bathroom and almost stepped on him.
Not a peep was made by any of these three during this big escape. Hershey lying there quietly watching. Tommy was still engrossed in Curious George and I was dumbfounded. First, I was worried that Joey might have hurt his incision. Then, I was worried that he might have hurt his head. Finally, I was just thrilled that he had the gumption and get up to somehow get himself out of his chair!!! He might not be sitting up yet, rocking on all fours, standing or even nearly walking, but he can get out of his seat, by golly! Go Joe!
I'm pretty sure if you looked up "trouble" in the dictionary, this photo might be there.
Beautiful Nicole dropped off an amazing dinner while looking absolutely ravishing. I immediately sent her a note for the recipe after Thomas Henry ate it all up and the delicious recipe can be found here: Pasta with Chicken, Sun-Dried Tomatoes, Gorgonzola and Pine Nuts
This week I have also been on my psycho-crazy efforts to work on helping Joey learn how to sit up on his own. I scour the internet, read my therapy books and search for ideas. I saw this one online on Babycenter and so immediately (I have a priority issue-- just about ever single thing I do is "immediate"--this causes for late nights and crazy days) I had to get to Wal-Mart to get the right basket and balls. Well, the first Wal-Mart didn't have the balls, so I traveled to a Super Wal-Mart, which I know some people hate Wal-Mart, but if you do go to Wal-Mart, super Wal-Mart in Wadsworth is the one to go to. There I bought not just 100 fun balls, but 200 fun balls. All I could think about was how awesome these would be in getting Joey to sit up! What I failed to do was to take in the Thomas Henry X factor. Almost 3-year-old boy plus 200 fun balls equals INSANITY!
Not sure what Joey's look is. Fear? Excitement? Shock?
Here I think he is wondering where we could have possibly gotten all of these balls....
Here you go, bro!
Hair color? Still a mystery. Blonde, strawberry blonde, red? Not sure-- just too cute.
Two beautiful ladies in one weekend? Fortunately my husband was not around for all this gorgeousness. :-)
Joey, however, thoroughly enjoyed it and I had a wonderful time catching up with Andrea.
I just love this series of photos-- Happy Monday!